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Meet the Community

You are not alone. The entire FA community, also known as the FAmily, is taking this journey with you. Meet a few of our dynamic people with FA below.  New Meet the Community interviews are posted every Monday, so be sure to visit often.  Please e-mail info@curefa.org if you would like to be interviewed for a Meet the Community post.
 

FARA Ambassadors

The FARA Ambassadors are a group of people living with FA who are committed to supporting FARA in the search for a treatment and cure. They represent the community by speaking at events, meeting pharmaceutical partners, giving media interviews, and more.

Meet the FAmily!


Mindaugas Tiscenka

MindaugusT1Name: Mindaugas Tiscenka

Age: 28

Where do you call home? Siauliai, Lithuania, Europe.

Education (degree[s]): Business Administration Bachelor's Degree

What is your relationship status? Single. Do you have children? No

What's a typical day for you? Wake up, do exercises, go to work, enjoy life.

How long have you known you are living with FA? It started when I was 16. Now I have now lived with FA for 12 years.

Are there any others with FA in your family? No. 

Adam Griffies

AdamGriffies1Name: Adam Griffies

Age: 23

Where do you call home?  Born and bred in Liverpool, UK.

Education (degree(s)); What is a current goal you have with your education? Until my FA diagnosis I achieved good grades in school, then when my A Levels started my focus evaporated as my thoughts were elsewhere. Since then, I have done a few courses, in particular a Social Sciences Access To Higher Education course which I passed with a Distinction in May 2016. I then went on to study Sociology and Criminology (BA) at Liverpool Hope University, but after finishing my first year there I decided my fatigue was making it too difficult for me. I am currently looking at Open University courses which should suit me better as they are done from home.

What is your relationship status? Do you have children? Where do you live? I am currently single and don’t have kids but I’d love this to change in the future. I live in a really nice flat alone, which I am extremely lucky to have. I also have family and friends nearby.

What's a typical day for you? I like to get up early, have oats for breakfast and normally listen to a podcast to set me up for the day. Then I get to the gym for an hour so. After that I’ll have lunch, either with a friend or my mum and get a few things done like odd jobs, shopping etc. In the evenings I like to relax by watching TV or reading a good book, and reflect on my day before bed.

How long have you known you are living with FA? (When and how were you diagnosed?) I was told I have FA in February 2010. I had a number of tests and then it was confirmed by bloods. My parents were actually told a couple of months before to help prepare for when I found out, which I understand. As strange as it sounds, my diagnosis was a slight relief (as well as being shocking and upsetting) because I finally had an explanation for why I’d been struggling with my main love – playing sports – for a few years. 

Allie Kittel

AllieKittel1Name: Allie Kittel

Age: 25

Where do you call home? Northern New Mexico

Education: I am currently in college studying drawing and painting.

Where do you live? I live alone in an apartment.

How long have you known you are living with FA? I was diagnosed when I was 5, but my parents told me I had FA when I was 8.

Are there any others with FA in your family? My older brother, Aaron, also had FA. He passed away in 2010.

Describe your transition from walking to walker/wheelchair. I had been walking without mobility aides until I was in high school. I started using a walker to help with balance and using a scooter to get in between classes faster with less fatigue. I used a wheelchair for shopping and longer activities outside of home. I got my first power wheelchair at 18. I started by using it most of the time outside my home, still walking some with my walker. I believe my transition to power wheelchair has kept me independent for a long time, by conserving my energy and allowing me to ride around for long distances independently.

What do you like to do to stay active and what type of exercises work for you to stay strong? I go to physical therapy 1-2x/week. There, I stand in the parallel bars, ride a stationary recumbent bike, and do other strengthening exercises. Physical therapy has been the best thing I do for my physical well-being, as well as my mental health. At home, I stand for longer periods in my standing frame and I have some exercises I can do from my wheelchair. 

Megan McIntyre

MeganMcIntyre1Name: Megan McIntyre

Age: 35

Where do you call home? I live in Southern Ontario, Canada near Hamilton.

Education: I have a Bachelor of Arts Degree in Psychology, from Brock University.

How will FA add to your future? A friend told me to write what I know, so I began to compose my memoir. I’m now in the process of writing a children’s book about my life and experiences.

What is your relationship status? I am currently single and do not have children. I live with my parents.

What's a typical day for you? I sleep until late morning, eat brunch, have a shower, do some writing, shopping or get together with a friend, have dinner and watch some of my favourite television shows.

How long have you known you are living with FA? I have known that I have FA since I was fourteen years old. A few months before I was diagnosed, the blood test for FA became available to doctors. I had a slightly awkward gait, scoliosis and swayed if I shut my eyes, so my neurologist did a blood test to check for FA.

Are there any others with FA in your family? My two older brothers do not have FA. There isn’t any sign of the neurological symptoms associated with FA in my extended family.

Describe your transition from walking to walker/wheelchair. In my early twenties, I reluctantly transitioned to using a wheelchair. I soon realized that a wheelchair was my key to the outside world. In my late twenties, my parents and I moved from a four level side-split, into a one level unit in a high-rise condominium. 

Jude Lally

JudeLally1Name: Jude Lally

Age: 35

Where do you call home? Lexington, KY

Education (degree(s)): Bachelor Business Administration from University of Kentucky

What is your relationship status? Do you have children? I am single, and live alone. I do have a fur baby/guard dog named Jermaine.

What's a typical day for you? A typical day for me begins and ends with caregivers coming to my house. The A.M. assistant helps me get out of bed, and ready for the day. This person performs general dog maintenance, meal prep, house chores, and some exercise. In between caregivers, I work on a new book, fulfill computer activities/phone calls, or watch Netflix, The P.M assistant helps with more exercising, personal care, and sleep-ready activities.

How long have you known you are living with FA? My official diagnosis was in 1998, however, my family and I, knew something was wrong a few years prior. It has been 19 years diagnosed with FA.

Are there any others with FA in your family? No one in my family, except me, has FA.

Describe your transition from walking to walker/wheelchair with FA. I maintained walking until college. I transitioned to a scooter around campus, then 18 months later, a wheelchair. For me, it was a tough transition. Every transition I make, from equipment to home modifications reminds me of disease progression. To some degree, it’s always an emotional process. 

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